Interview April – Jennifer Purrvis

It’s time to meet my next guest, the wonderful Jennifer Purrvis!

JenniferPurrvis

Introduce Yourself and tell us a bit about you….

My name is Jen. I grew up in the Houston area but live in Wellington, New Zealand. I moved to New Zealand when I was 19 and have lived in various areas in NZ but have kicked around in the capital city for 11 years. I have one daughter who will be 14 and 4 cats. I am single but formerly married. I’m a terrible cook but enjoy baking. I’m currently studying towards a Bachelor of Science in Psychology and hope to get admitted into a Masters of Forensic Psychology programme once I complete my undergraduate. I run Chronic Illness Cat, mostly on Facebook, but you’ll have seen us on other platforms too. Muffin is a real cat, who lives in France, but her dad is from Nelson in New Zealand. He sometimes comes back for a visit but we’ve never met up, though we should.

Chronic Illnesses/Disabilities I have…

I grew up a child of anxiety and depression. After I had my daughter I became severely agoraphobic and was diagnosed with a mood disorder, not otherwise specified. This would finally be diagnosed as Bipolar Disorder in 2018. I also have PMDD.  In 2007, I nearly lost my life after a doctor bagged an IV of an antibiotic I was orange banded as allergic to. I saw a huge white light. I felt a shock hit my body and felt fire ants start biting all over my body. That’s really all I remember. When I woke up I couldn’t unfold my arms or bear weight on my body. It would take years to regain my independence, my tolerance, my sanity. I was so, so angry about the disability attacking me, the pain I was constantly fighting and everything I was losing. It’s been nearly 12 years and things are so much better. I’m so much happier and freer and independent. However, in the last year, I’ve been diagnosed with Autoimmune Urticaria and I’m now on higher dose Cyclosporine. I’ve started to feel those dark shadows creeping in again. The pain is returning, so is the tiredness, reliance on drugs for pain, and I worry about stepping so far back.

My symptoms conditions began…

As a kid. I think I’ve always had an autoimmune disease. I first started getting fevers when I was 2 weeks old. I was just always sick. Always tired. I caught mono twice as a teen. I had chicken pox so severe as a kid I had them down my throat. I know I was severely depressed at 12. I had sleeping issues as a teen. I had coping methods that were not safe or would be suggested. I had a devastating eating disorder.

The night I got so sick back in 2007 was a normal night. I felt slightly off and started feeling worse and worse. I asked to go to the Emergency Department. I expected to have an infection but I didn’t expect to find myself fighting for my life. It turns out I had suspected sepsis. The bag of antibiotics was important, but so was understanding the importance of orange banding of patient allergies.

Fast Forward to the present and the first few days of realising I was getting sick again were terrifying. I knew something was wrong, but I never expected it to be something so full on. The first symptom I started experiencing was itching when sweating. Whenever and wherever the sweat would touch, I would feel like a jellyfish sting and hideous itching. I put it down to being ‘dirty’. The second major symptom that developed was a reaction to showering. Wherever the water hit, another jellyfish-like sting would develop, with burning and itching. But following the itching and burning came nausea, a feeling of being overwhelmed in the head and vomiting.

I started taking antihistamines, antihistamines and h-blockers, more antihistamines and finally saw a specialist who told me that due to my previous history of trialling drugs, I was to start Cyclosporine. At first, I was really optimistic because I had 2 weeks of showering with very little symptoms. But then, as soon as it had arrived, the optimism left. All the symptoms were back.

My diagnosis process has been…

Confusing. When I was first sick in 2007, no one knew what was wrong with me. I saw specialists and doctors all the time. People had opinions from Lupus to Still’s Disease to MS to ‘just experiencing a shock’. To get better care, we sold our home and moved. I saw another specialist who told me I had Lupus and “was just being a woman about it”. I was put on every drug you could find. Nothing helped. Nothing improved.

I saw just about every rheumatologist in the capital city. No one had answers for me. In the end, I just stopped going. It wasn’t worth the money. When I started getting sick again, and the blood tests were all fine, it started feeling like deja vu all over again.

However, this time, the specialist knew that this was Autoimmune Urticaria and that I had some dermagraphica which made him feel more confident. It felt unusual that I actually had symptoms someone was familiar with. Though, he did feel there was more autoimmune going on and asked if I wanted to begin looking for that and I told him I didn’t. I just couldn’t face doing it all again.

The hardest part of living with my disability/illness is…

Not knowing if I’m ever going to live normally as other people do. Will I be able to work? Will I finish my studies? Will I ever be independent? It scares the hell out of me. What if the medicines just get worse? I can’t nap through life. These questions just go around and around my mind sometimes. Fears for my future feel almost disabling at times.

A typical day for me involves…

Waking at 6:30. If it’s my week with my daughter then I get up with her and help her get ready for school. Once she’s left for the bus, I head back to bed. If I’m not with her, I go back to sleep. I try to wake up at 6:30 regardless so as to keep a regular rhythm. Sleep is so crucial for the maintenance and care of the Bipolar person. When I wake up I have a cup of tea and run errands or study, depending on the day. It’s really important for me to keep my grades up, so studying is important.

I’ve gotten it into my head that I need to do some sort of exercise, even though I’m not supposed to change my body temperature and/or sweat. I have some hand weights and I’m looking into belly dancing on youtube. I want to stay active for my brain and I want to stay mobile. But gosh, I know I’ve lost a lot of dexterity and put on weight since I stopped going to the gym. Swimming is out, maybe yoga? Am I that cliche? Just do some yoga?

I try to eat normally but I’ve got some problems with eating and I take Seroquel at night, so that makes up for any lost calories I haven’t eaten during the day. Right now Married at First Sight Australia is on, so I’m pretty addicted to that. Otherwise, I just try to rest and study. Glamorous, right?

One thing I cannot live without is…

Hot tea. I’m thoroughly addicted to caffeine and classic Bell Tea with milk gets me through my day. I probably go through 6 to 8 tea bags a day. It’s probably the reason I actually can move. Also, probably why I don’t sleep much.

Being ill taught me…

To take nothing for granted and to be amazingly grateful for the gifts that I have. Being able to walk is tremendous. I spent 9 months on the couch. Slowly I learned to crawl, then scoot and then walk again. Amazing. Getting the energy to work in cat rescue and change litter pans and chase after cats made me forever grateful for the second chance I was given. Now I’m studying to become independent. I’ve got my brain back. I will never not be angry and horrendously filled with rage at what happened to me, but I will also never not be amazed and filled with gratitude that I am where I am today. I’m a survivor.

The advice I’d given someone newly diagnosed…

Is that life goes on. It’s different but it goes on. It’s like when the brand of your favourite chip alters things and it’s never the same but you just go on buying it all the same. You can’t pretend nothing has changed, but at the same time, you still enjoy it enough to keep buying it. Some days are going to be horrific. And you’ll cry. You’re entitled to cry. And get mad. And kick at things. But some days will be not so bad too. And hopefully, you’ll get more of those not so bad days soon enough. That’s all you can ask for. And hugs. Ask for hugs. No one will think less of you for doing so.

My support system is…

Really small. I have a really truly, true-blood ride or die best friend on the net but-not-imaginary friend who gets me and loves me and would do anything for me named Alice. She’s also on the Page. I hope one day to be able to explain to her how much she means to me. And to thank her for lifting me up on those really shitty days.

I have my ex who does a lot of practical things for me. I have my daughter who shouldn’t have to grow up so quickly. And myself. I lean on my GP, Simon, a lot. And that’s it. I do a lot of the emotional stuff myself. I’ve become a lot quieter and controlled. Well, the Abilify has made me that way. I could do with a therapist. And a boyfriend. But we’ll see.

If I had one symptom-free day…

Gosh, I’d just sleep. Nothing would hurt. I’d shower too. Wash my hair and not throw up. Go lay in the sun. And sweat. Imagine!

One positive of having a chronic illness is…

That it gives me an amazing sense of humour and fantastic charm. I can joke around with just about anyone and I relate to a large number of people going through many things. It’s given me a sense of empathy that’s lead me to psychology and wanting to care for others. I’ve always been sort of activist-y anyways, but being sick has really pushed that envelope in fighting for others to get the same rights and access, which has been super useful having a daughter with extra needs.

Thanks so much for having me. You can find me and Muffin at the links below. And me and my kitties on my personals.

My Social Media links:
Facebook: https://www.facebook.com/ChronicIllnessCat
The Cat Tree: https://www.facebook.com/groups/thecattree/
Twitter: https://twitter.com/chronillcat
Instagram: https://www.instagram.com/chronicillnesscat/
Personal Instagram: https://www.instagram.com/smilingtabby/
Personal Twitter: https://twitter.com/kittypajama

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What It Memes To Have Chronic Pain

They say a picture is worth a thousand words, so today I present to you what it means to have Chronic Pain, in meme format:

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There is always hope

Fifty Christmas Quotes

In the Spirit of the Season, here are 50 Christmas quotes to help bring good cheer to your heart during the holidays. Thanks to the website Daring To Live Fully for the list.

1. “I sometimes think we expect too much of Christmas Day. We try to crowd into it the long arrears of kindliness and humanity of the whole year. As for me, I like to take my Christmas a little at a time, all through the year. And thus I drift along into the holidays – let them overtake me unexpectedly – waking up some fine morning and suddenly saying to myself: ‘Why, this is Christmas Day!’”

~ David Grayson

2. “It’s beginning to look a lot like Christmas;
Soon the bells will start,
And the thing that will make them ring
Is the carol that you sing
Right within your heart.”

~ Meredith Willson, “It’s Beginning To Look A Lot Like Christmas”

3. “Christmas gift suggestions: to your enemy, forgiveness. To an opponent, tolerance. To a friend, your heart. To a customer, service. To all, charity. To every child, a good example. To yourself, respect.”

~ Oren Arnold

4.Christmas quotes

5. “Gifts of time and love are surely the basic ingredients of a truly merry Christmas.”

~ Peg Bracken

6. “Instead of being a time of unusual behavior, Christmas is perhaps the only time in the year when people can obey their natural impulses and express their true sentiments without feeling self-conscious and, perhaps, foolish. Christmas, in short, is about the only chance a man has to be himself.”

~ Francis C. Farley

7. “It is Christmas in the heart that puts Christmas in the air.”

~ W.T. Ellis

8. “Christmas waves a magic wand over this world, and behold, everything is softer and more beautiful.”

~ Norman Vincent Peale

9. “Christmas now surrounds us,
Happiness is everywhere
Our hands are busy with many tasks
As carols fill the air.”

~ Shirley Sallay

10. “Each sight, each sound of Christmas
And fragrances sublime
Make hearts and faces happy
This glorious Christmastime.”

~ Carice Williams

11. “Blessed is the season which engages the whole world in a conspiracy of love!”

~ Hamilton Wright Mabie

12. “Christmas is not as much about opening our presents as opening our hearts.”

~ Janice Maeditere

13. “Love is what’s in the room with you at Christmas if you stop opening presents and listen.”

~ Author unknown, attributed to a 7-year-old named Bobby

14. “I wish we could put up some of the Christmas spirit in jars and open a jar of it every month.”

~ Harlan Miller

15. “Christmas is the season of joy, of holiday greetings exchanged, of gift-giving, and of families united.”

~ Norman Vincent Peale

16. “Christmas is most truly Christmas when we celebrate it by giving the light of love to those who need it most.”

~ Ruth Carter Stapleton

17. “Good news from heaven the angels bring,
Glad tidings to the earth they sing:
To us this day a child is given,
To crown us with the joy of heaven.”

~ Martin Luther

18. “The best of all gifts around any Christmas tree: the presence of a happy family all wrapped up in each other.”

~ Burton Hillis

19. “Probably the reason we all go so haywire at Christmas time with the endless unrestrained and often silly buying of gifts is that we don’t quite know how to put our love into words.”

~ Harlan Miller

20. “For centuries men have kept an appointment with Christmas. Christmas means fellowship, feasting, giving and receiving, a time of good cheer, home.”

~ W. J. Tucker

21. “Christmas is not just a time for festivity and merry making. It is more than that. It is a time for the contemplation of eternal things. The Christmas spirit is a spirit of giving and forgiving.”

~ J. C. Penney

22. “I heard the bells on Christmas Day
Their old, familiar carols play,
And wild and sweet
The words repeat
Of peace on earth, good-will to men!”

~ Henry Wadsworth Longfellow

23. “I love the Christmas-tide, and yet,
I notice this, each year I live;
I always like the gifts I get,
But how I love the gifts I give!”

~ Carolyn Wells

24. “Mankind is a great, an immense family. This is proved by what we feel in our hearts at Christmas.”

~ Pope John XXIII

25. “Let us have music for Christmas…
Sound the trumpet of joy and rebirth;
Let each of us try, with a song in our hearts,
To bring peace to men on earth.”

~ Mildred L. Jarrell

26. “Christmas is not a time or a season but a state of mind. To cherish peace and good will, to be plenteous in mercy, is to have the real spirit of Christmas.”

~ Calvin Coolidge

27. “I don’t think Christmas is necessarily about things. It’s about being good to one another, it’s about the Christian ethic, it’s about kindness.”

~ Carrie Fisher

28. “What is Christmas? It is tenderness for the past, courage for the present, hope for the future. It is a fervent wish that every cup may overflow with blessings rich and eternal, and that every path may lead to peace.”

~ Agnes M. Pharo

29. “May Christmas lend a special charm
To all you chance to do.
And may the season light your way
To hopes and dreams anew.”

~ Garnett Ann Schultz, “My Christmas Wish”

30. “I’m dreaming of a white Christmas,
Just like the ones I used to know,
Where the tree tops glisten
And children listen
To hear sleigh bells in the snow.”

~ Irving Berlin

31. “I will honor Christmas in my heart, and try to keep it all the year.”

~ Charles Dickens, Ebeneezer Scrooge, A Christmas Carol

32. “And the Grinch, with his Grinch-feet ice cold in the snow, stood puzzling and puzzling, how could it be so? It came without ribbons. It came without tags. It came without packages, boxes or bags. And he puzzled and puzzled ’till his puzzler was sore. Then the Grinch thought of something he hadn’t before. What if Christmas, he thought, doesn’t come from a store. What if Christmas, perhaps, means a little bit more.”

~ Dr Seuss

33. “The merry family gatherings–
The old, the very young;
The strangely lovely way they
Harmonize in carols sung.

For Christmas is tradition time–
Traditions that recall
The precious memories down the years,
The sameness of them all.”

~ Helen Lowrie Marshall

34. “Christmas is forever, not for just one day,
for loving, sharing, giving, are not to put away
like bells and lights and tinsel, in some box upon a shelf.
The good you do for others is good you do yourself.”

~ Norman Wesley Brooks, “Let Every Day Be Christmas”

35. “This time of year means being kind
to everyone we meet,
To share a smile with strangers
we may pass along the street.”

~ Betty Black

36. “Until one feels the spirit of Christmas, there is no Christmas. All else is outward display–so much tinsel and decorations. For it isn’t the holly, it isn’t the snow. It isn’t the tree not the firelight’s glow. It’s the warmth that comes to the hearts of men when the Christmas spirit returns again.”

~ Unknown

37. “There is a Christmas song upon the air,
There is a joy innate within the heart;
An inner sense of peace, a holy light
Illumines life and sets these days apart.”

~ Edna Greene Hines

38. “I am not alone at all, I thought. I was never alone at all. And that, of course, is the message of Christmas. We are never alone. Not when the night is darkest, the wind coldest, the world seemingly most indifferent. For this is still the time God chooses.”

~ Taylor Caldwell

39. “Christmas in Bethlehem. The ancient dream: a cold, clear night made brilliant by a glorious star, the smell of incense, shepherds and wise men falling to their knees in adoration of the sweet baby, the incarnation of perfect love.”

~ Lucinda Franks

40. “Are you willing to believe that love is the strongest thing in the world – stronger than hate, stronger than evil, stronger than death – and that the blessed life which began in Bethlehem nineteen hundred years ago is the image and brightness of the Eternal Love? Then you can keep Christmas.”

~ Henry Van Dyke

41. “Ask your children two questions this Christmas. First: What do you want to give to others for Christmas? Second: What do you want for Christmas? The first fosters generosity of heart and an outward focus. The second can breed selfishness if not tempered by the first.”

~ Author Unknown

42. “Bless us Lord, this Christmas, with quietness of mind; Teach us to be patient and always to be kind.”

~ Helen Steiner Rice

43. “Christmas! The very word brings joy to our hearts. No matter how we may dread the rush, the long Christmas lists for gifts and cards to be bought and given–when Christmas Day comes there is still the same warm feeling we had as children, the same warmth that enfolds our hearts and our homes.”

~ Joan Winmill Brown

44. “Christmas – that magic blanket that wraps itself about us, that something so intangible that it is like a fragrance. It may weave a spell of nostalgia. Christmas may be a day of feasting, or of prayer, but always it will be a day of remembrance – a day in which we think of everything we have ever loved.”

~ Augusta E. Rundel

45. “Christmas day is a day of joy and charity. May God make you very rich in both.”

~ Phillips Brooks

46.

Christmas quotes

47. “Christmas is doing a little something extra for someone.”

~ Charles Schulz

48. “Christmas, my child, is love in action.”

~ Dale Evans

49. “Off to one side sits a group of shepherds. They sit silently on the floor, perhaps perplexed, perhaps in awe, no doubt in amazement. Their night watch had been interrupted by an explosion of light from heaven and a symphony of angels. God goes to those who have time to hear him–and so on this cloudless night he went to simple shepherds.”

~ Max Lucado

50. “Want to keep Christ in Christmas? Feed the hungry, clothe the naked, forgive the guilty, welcome the unwanted, care for the ill, love your enemies, and do unto others as you would have done unto you.”

~ Steve Maraboli

 

There is always hope

Seasonal Poetry

ChristmasFBC3

A Holiday Treat

The scent of Christmas fills the air
Shoppers rushing everywhere
Santa’s bells ring on the street
Everything is a Holiday Treat
Snow is falling, fluffy white
Children playing, what a sight
Cookies baking, a spicy feat
Everything is a Holiday Treat
And when the day is done, we sit and smile
Cocktail parties really are our style!
We make new friends and catch up with the old
Then bundle up and head home in the cold
Kiss the kids and tuck them in
Pull the blankets to their chin
Think of how they look so sweet
Everything is a Holiday Treat
Slip the gifts under the tree
What a pretty sight to see
The entire house looks perfectly neat
Everything is a Holiday Treat
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

All That Matters

It’s the Little Things that matter
They’re the things that mean a lot
They’re the things that I can count on
When I’m giving things a thought

Oh there’s lots of big grand gestures
That are meant to mean big things
But in the end, they aren’t the ones
That tug at my heartstrings

I prefer the smaller hidden ones
The things that seem quite shy
The little acts that are given out
Not meant to catch your eye

It’s the little things that matter
That make a quiet sound
I love them best from all the rest
They make the world go round

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

T’was The Night Before New Year’s

T’was The Night Before New Year’s
And all through the house
Every creature was stirring
Including the Mouse

The Mouse was preparing
To stay up quite late
To see what the big deal was
And why it was GREAT

So he picked out a snack
Of some sharp cheddar cheese
From the trap in the kitchen
Meant to trap him, oh please!

Then into the Living Room
Round the Humans he passed
And the mangy old cat
He scurried quite fast

The Humans were laughing
And drinking their drinks
All Fuzzy and Bubbly
And their glasses made clinks

Their attention was focused
On the big screen TV
So the Mouse sat and watched it
And what did he see?

A huge crowd was gathered
Some place called “Times Square”
To watch a big ball
That was going to drop there

The Humans kept checking
Their clocks for the time
And soon were all chanting
First 10, and then 9

They went through the numbers
And ended at 1
Then yelled Happy New Years!!!
And then came the fun!

Everyone cheered
And they hugged and they kissed
Then they went back again
To the ones they had missed

The Mouse looked around
To the mangy old cat
Who layed there quite still
On it’s mangy old mat

Then without even thinking
The Mouse ran to the cat
(he couldn’t believe the
old thing was so fat!)

He said Happy New Year
And kissed the cat’s face
then said “here’s to a New Year
of hiding and chase”

The cat looked him over
And kissed him back too
“Thanks Mouse, Happy New Year
and the same back to you!”

Then the Mouse took his cheese
And went back to his house
Climbed into his bed
He was one tired Mouse

He’d had a great evening
He’d stayed up real late
And he learned why that night
Really was truly GREAT

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

There is always hope

I Want You To Want Me

I’m tackling a tough topic again today – intimacy when you live with Chronic Pain. If you remember the Cheap Trick song, it’s been on my mind lately:
I want you to want me.
I need you to need me.
I’d love you to love me.
I’m beggin’ you to beg me.
I want you to want me.
I need you to need me.
I’d love you to love me.
How do you enjoy an active and healthy love life when you’re in pain all the time. How do you appease your partner, who may not understand what it’s like to be in pain 24/7. Even when you’ve explained it a million different ways, when it comes to talking about sex, and how painful it can be, it’s not an easy conversation, no matter how long you’ve been a couple. And your sexual orientation makes no difference either.
Intimacy is the fuel that keeps a good relationship running. It encompasses so much more than just sex. Think about the different ways it’s defined in the Thesaurus:

  1. the state of being intimate.
  2. a close, familiar and unusually affectionate or loving personal relationship with another person or group.
  3. an act or expression serving as a token of familiarity, affection, or the like, to allow the intimacy of using first names.
  4. an amorously familiar act; liberty.
  5. sexual intercourse.

Intimacy is also about being close emotionally. When was the last time you went on a date? When was the last time you actually sat and talked to each other ABOUT each other? Not about work or the kids, but about the two of you and how you’re doing. What’s new, what’s real, what you love about each other? When was the last time you looked into each other’s eyes and said “I love you” and really meant it?
If you haven’t dated for a while, maybe it’s time you did. Here are 25 easy date ideas that might get you started in the right direction:

  1. Go to a community play,
  2. Do an inside or outside picnic
  3. Work out together
  4. Go roller skating or ice-skating
  5. Movie marathon with ice cream sundaes
  6. Play hide and seek in a cornfield (or the woods)
  7. Go on a walk around your neighbourhood in the evening
  8. Go to estate sales together
  9. Make a romantic dinner at home
  10. Build something together
  11. Go bowling
  12. Go hiking!
  13. Find the best happy hours in town and make the appetizers your meal
  14. Have friends over and play board games
  15. Go to an antique store and talk about the past lives of old objects
  16. Get some thrift store tennis rackets and go to your city’s free courts
  17. Go to the neighbourhood pool
  18. Fly kites!
  19. Test drive an expensive car
  20. Go on a tour beer, food, etc.
  21. Find out what tours businesses in your city offer and try one out.
  22. Go thrifting or garage sale-ing together
  23. Do a breakfast date
  24. Find a free (or very cheap) class and take it together
  25. Go to the animal shelter and pet the animals

So once you’ve reconnected and you’re ready for sex again, the Mayo Clinic offers these suggestions when you have a partner who lives with Chronic Pain*
Sexual intercourse is just one way to satisfy your need for human closeness. Intimacy can be expressed in many different ways.

  • Touch. Exploring your partner’s body through touch is an exciting way to express your sexual feelings. This can include holding hands, cuddling, fondling, stroking, massaging and kissing. Touch in any form increases feelings of intimacy.
  • Self-stimulation. Masturbation is a normal and healthy way to fulfil your sexual needs. One partner may use masturbation during mutual sexual activity if the other partner is unable to be very active.
  • Oral sex. It can be an alternative or supplement to traditional intercourse.
  • Different positions. Lie side by side, kneel or sit. Look in your library or bookstore for a guide that describes and illustrates different ways to have intercourse. If you’re embarrassed to get this kind of book locally, try an online book retailer.
  • Vibrators and lubricants. A vibrator can add pleasure without physical exertion. If lack of natural lubrication is a problem, over-the-counter lubricants can prevent pain from vaginal dryness.
*https://www.mayoclinic.org/chronic-pain/art-20044369

The key factors to intimacy are trust, respect and honesty. You need to be able to trust your partner won’t push you into something you’re not physically able to do and will respect your limits. There needs to be honesty between the two of you and with yourselves as well. Don’t use your Chronic Pain as an excuse to get out of sex if it really isn’t a problem…that’s not fair to your partner. If you’re avoiding sex for another reason, then be honest. If you’re mad at your partner for something they’ve done, then say so. Tell them what and why and talk it out.
Don’t use your health to avoid other issues, because you’re simply breaking the trust and respect factors when you do that. You already have enough physical pain in your life – don’t add mental pain as well. Intimacy is too valuable a commodity to just throw away. Keep working on it and before you know it, you’ll be building and rebuilding the relationship of your dreams. And that’s no Cheap Trick!
There is always hope
 
 
 

August Link Ups

August Link Ups for A Chronic Voice
I’m taking part in my very first Link Ups on the blog A Chronic Voice.  Sheryl is the Authoress of the page and she hosts these online parties every month, providing 5 word prompts to help get us writing. We’re allowed to submit one post per month utilizing these prompts, so I thought I’d give it a go.

Prompts for the Month

  1. Figuring
  2. Completing
  3. Boring
  4. Cuddling
  5. Chatting

1.Figuring: I spend a lot of time figuring out what I want to share with my readers when I’m writing up new blog posts. A lot of my posts have to do with my own personal health, but sometimes I switch things up and share about other things, such as our pets that bring us such comfort when we’re feeling ill, or about body image or feeling invisible. But I often wonder if that’s what my readers want, or if they want more generalized posts about Fibro and Invisible Illnesses, so I second guess myself a lot. I’m a fairly new blogger, having only seriously been at it for the last 3 months now. I think my best bet is to mix it up and include a variety of posts and see what type of comments and traffic I get and just decide from there if I’m doing the right thing.
2. Completing: When I’m in pain, I tend to start a lot of different projects to keep my mind busy, but I’m not always good about completing them. I have half done crafts all over the place – artwork I’ve started and never finished, a multi-media piece that I don’t know what to do with, beads that I want to make something with, polymer clay that I want to create with, crochet needles and yarn that I bought to teach myself how to make a scarf and a needlepoint kit of a cow, because I love cows. I need to learn how to focus on one thing at a time, complete that particular project and then move on to something new instead of having 6 different things going and none of them being worked on.
3. Boring: Being housebound because of Chronic Illness can be awfully boring sometimes. You wouldn’t think so with all the things I have that I could be doing, like all the projects I just mentioned. I could also be watching Netflix or reading a book or making a coffee date, but here’s the thing…most of the time, I hurt too much to consider doing much of anything at all. I try not to complain to anyone, least of all my husband, but most days, I start off by having a wee cry. The rest of the day is basically one long blur of bore with each day the same as the one before. I’m always up super early because I don’t sleep well, I spend a lot of time on Facebook, I work on my blog, I play a few Facebook games, I spend time with our cat Dorie, and I wait for the mail. Hubby comes home, we have dinner, he goes to bed fairly early, I do more on Facebook or my blog and finally, around midnight, I try going to sleep, just to wake up at 4am to start all over again. Boring!
4. Cuddling: I am 5’2″ tall and my husband Ray is 6’5″ tall. You wouldn’t think so, but it makes for perfect cuddling!  When I hug him, my ear is right at the level of his heart and I can hear how his heartbeat quickens when we connect like that. Laying together, we fit like two perfect pieces of a jigsaw puzzle, each body part meshing with the other. We spoon together, I snuggle up to him – no matter how we cuddle together, it’s always a perfect fit.
5. Chatting: I love chatting online with people and the one thing I can honestly say about myself is that I love to help other people. I stay up to date on current affairs, but mostly, I’m a counsellor. I like to listen to people and it seems they naturally like to share their problems with me. I’ve lived an interesting life and have a lot of common sense, so I enjoy offering them good old fashioned advice like Ann Landers. That’s why I was delighted to find websites like Quora and The Mighty  – they’re perfect for me. I’m able to share my knowledge and wisdom with others while learning at the same time.
So, there we have it, my first attempt at the Link Up Challenge! I hope you all enjoy the read and decide to follow me for more of my posts. Just click the little “follow me” button on the right side of the page and voila! you’re done! You’ll get an email every time I post something new.
Thanks for your ongoing support. I blog to share my thoughts, to educate the public on Fibromyalgia, Chronic Pain, Chronic Fatigue Syndrome and Invisible Illness and to give from the heart. Remember…
There is always hope

Creature Comforts

Oh, today’s post is a goody!!!

Today, I’m talking about creature comforts…and by that, I mean the pets that bring us comfort when we’re in pain, or just needing a little extra loving. This is a guest post and I’m going to be introducing you to several of my Internet friends and their furry companions.

Lets start with Catherine Taylor and her Bichon Chloe. Catherine shared this with me:
Bichons in general are very loyal and Chloe and I bonded from the start. It was like she imprinted on me … she was my shadow. When she was a pup, we had her outside one day, playing in the girl’s sandbox/play centre. It had a small slide and the girls put her at the top of it and ‘encouraged’ her to slide down it. Chloe was having nothing to do with it. I went to the bottom of the slide, crouched down and called to her. She turned around and saw me and tentatively made her way to the top, looked around once and then slid down to my waiting arms. This dog trusted me 100%. I love animals and feel privileged when an animal trusts me. I believed this dog would risk her life for me, if she had to. We were friends for life.

Chloe1

Chloe comfy in the chair

When I developed fibromyalgia, she stayed by my side as I spent more time in bed resting. She could have stayed near the action (and food) with other members of the family downstairs, but she became a fixture, literally, at my feet and often lying over them. It was like having a weighted therapy blanket (didn’t know about those back then). She wasn’t too heavy, just the perfect amount of pressure to make me feel snug and my feet warm, which are usually cold. She’d stay for the duration while I slept. Wherever I was, she was beside me.

Chloe2

Chloe laying on Mommy’s legs in bed!

As anyone can tell you, it’s comforting and soothing to have the warmth and devotion of another being close by, one that doesn’t require anything from you. Studies have shown that blood pressure and heart rate decrease when petting an animal. Chloe passed away last year and I miss having her by my side.
What a sweetheart!!!

Our next guest is Elaine Zena Feather and her precious rescue baby Felix
Felix is my gorgeous rescue fur baby. He’s been with me almost a year and a half and he was barely more than a kitten when arrived. My granddaughter named him Felix which is also special. We’re not sure if he had been abandoned but he was definitely very nervous. He was happy to come to me straight away and have cuddles but he kept finding little hidey holes when we first got home (including diving into my drawer under the bed and he would not come out lol. My son had to remove the drawer and coax him out. Before long he made himself right at home, stretching his long, furry body out on the carpet.

Felix1

Stretched out!

He is such a loving boy and will lie right next to me wherever I am, snuggling up and wanting lots of cuddles. He will lie on my lap and turn himself over so he’s lying in my arms. Then he’ll put his paws up to my face for me to kiss them. I cannot imagine my life without him. He follows me round like a dog and comes running when I call. He’s very vocal and “chats” away to me. He really is a comfort and is loved by all my family. He is also very good with my grandchildren especially my grandson who was totally besotted with him. He has beautifully long fur and is happy to be brushed and will even roll over for me to do both sides lol.

Felix5

Felix showing off his luxurious fur

His one “downfall” is he keeps bringing me “presents” which I do my best to rescue and then release back into the wild. Unfortunately I have ended up being bitten a few times by rescued mice and boy does it hurt. I just sometimes forget because I just want to try to pick them up before they disappear somewhere in my house that I won’t be able to find them. I can’t really blame Felix though because it’s what cats do and we have amazing open fields at the back of us which is a great hunting ground. They say having an animal reduces stress and stroking them is very good to reduce blood pressure but also to keep you alive longer. I totally believe that’s true cos having my snuggles with Felix is wonderful and makes me forgive him anything……..even him waking me up at 4am to go out lol xxx

Felix2

Elaine and Felix cuddling each other

I love how furry Felix is!!

Our next guest is Julie Villefana and her Old English Sheepdog Don Pedro
I have been living and coping with having Fibromyalgia as well as Chronic Fatigue Syndrome for many years. At the beginning I slept a lot, as well as cried and generally felt very unhappy. My mum lived with us, so I was busy hanging out with her. She basically got me out and about as little as I did. Then about 10 years ago my mum had a stroke and was first hospitalized and then placed in a Nursing Home. I was devastated. I had lost my only friend who really understood, or at least tried to understand my new-found life. Even though I am happily married, my hubby is away a lot. So, about 8 yrs ago we decided to get an Old English Sheepdog. We named him Don Pedro and he was 8 weeks old when we brought him home.

DonPedro4

Don Pedro, Eight Weeks Old

He was so small that he fit on my mum’s tray on her wheelchair! He forced me to not only have to take him out to do his business and general exercise, but also to learn to smile again. He brought and still does, bring such joy to the world! He attracts attention wherever we are. Many stop to ask questions about him, to which I have to reply, naturally. He made me happy again. Sometimes I feel that I have to dress the part to just take him outside to be seen by the world. Plus, he is such a character and certainly has a personality of his own.

DonPedro3

Playing with his girlfriend

If it weren’t for him my life would be very much duller. He seems to have adopted my lifestyle in that he rests when I do, which is a lot. Plus he seems to sense when I am at my worse and snuggles beside me on our bed. (We actually had to get a bigger bed as he tends to jump in ours and slowly push us to the edges so that he can stretch out)! I post a lot of pictures of our Don Pedro on Facebook and Instagram, etc, because he is so photogenic and adorable to us at least.

DonPedro1

Look at that smile!

We have been on the front page of the news twice, including even winning a Lookalike Competition! And now that we have recently moved to Victoria, he is constantly being photographed by the massive array of tourists. Yes I realize that his breed don’t live forever, and we hope that he will be with us for many more years of sheer joy, we know that he will leave us one day, where I will have to carry on as best I can, but for now I will enjoy everything that he has to offer. I thoroughly recommend an OES for anyone housebound and in constant pain as am I.

DonPedro2

Julie and Don Pedro enjoying the snow

I can’t wait to meet Don Pedro as Julie and I are friends in real life and she just moved to my town of Victoria, BC!

And finally, there’s my pet, Dorie. What can I say about my sweet kitty? We’ve had her for 9 years now, since she was a kitten and she is definitely MY cat.

BabyDorie

Dorie at 10 weeks old

She plays with Ray but she cuddles with me and I’m the one she curls up to at night when it’s bedtime. She sleeps tucked right up beside my tummy, as tight as she can and only moves when I need to get up to pee. She waits for me to come back and get comfy and then *boom* she’s right back in there again!

PamDorieBed
She seems to instinctively know when I’m having a bad day too. She loves to come curl up in my lap on those days, offering me comfort. On other days, when I’m blogging or otherwise occupied on the computer, she’ll stay close enough to wait to an opportunity to sneak onto my lap whenever she can!

Dorie2Oct2016

Just waiting for her moment!

Dorie has two special toys that she considers her babies – a blue crocheted string and a small stuffed bunny. She carries Bunny and String around the house, chirping at them and leaving them in the strangest places. We’ve found them in the food bowl before, and I once found Bunny in the recycling bin and the bathtub! Our rule is that we never move them unless absolutely necessary.

BunnyAndBSODinHelmet1

Here I’d only set my motorcycle helmet down for a short while but apparently it was a good home for both toys! Dorie makes me laugh with her antics and I think that’s one of the best things a pet can do for you when you live with chronic pain – laugh!

Do you have a pet that helps you feel better? Tell me about it in the comments below and if you’d like to be featured in a post like this in the future, send me your information in the Contact Me form and I’ll be in touch!

Thanks for reading!

There is always hope!

Talkin’ Bout My Ment-al Illness

Did you automatically sing that title as “talking bout my Generation”?  That’s what I was aiming for!

I want to talk about Mental Illness today and the meds I take. I’m not ashamed to say I have Bipolar Disorder but I know there is a huge stigma around having a mental illness and talking about it. There are far too many people who grew up believing you should keep things like that hush hush because it would ruin your reputation, and that of your family if you said anything. People were put away in homes and hospitals who were severely mentally ill, or stories were told about “crazy Aunt Gladys” or “weird Uncle Marvin” and you knew you weren’t supposed to either hear them or repeat them.

Things are changing thank God, and I’ve never been afraid to just come out and say “I am Bipolar” in conversation. It’s a part of me, so why would I hide it? It was actually a relief to finally have a diagnosis because then I knew what those manic highs and depressing lows were all about. Do I like the highs and lows? Sometimes. They can be exciting, and energizing and fun. They can also be ugly and messy and scary. But the overall thing about having BD is that it’s uniquely a part of me. Take it away, and I would be so different. Less courageous. Less outgoing. Less interesting. Less, less, less….

One difficult thing about having a mental illness is the issue of being on medications. What you’re trying to do is balance the chemicals in your brain called Serotonins. Finding the right balance is a tricky business and can sometimes take years. I know people who have been on up to 17 different medications at various times, just trying to find the right combo that works for them. I’ve been lucky in that I was put on Seroquel when I was first diagnosed and it worked well for me for a long time.

It wasn’t until late 2016 when I started experiencing the auditory hallucinations  – I could hear music when others couldn’t, and I knew something was going on. I saw a Psychiatrist to rule out any new mental illnesses, and then Dr. Leong recommended the MRI and EEG I’ve talked about in earlier posts. We also decided to switch the Seroquel to something new and that’s when I started taking the Abilify.
I was nervous about taking it at first because of the list of side effects. I am bolding the ones I’ve experienced so far:

Common Abilify side effects may include:
  • weight gain;
  • blurred vision;
  • nausea, vomiting, changes in appetiteconstipation;
  • drooling (mild, at night);
  • a headache, dizzinessdrowsiness, feeling tired;
  • anxiety, feeling restless;
  • sleep problems (insomnia);
  • cold symptoms such as stuffy nose, sneezing, sore throat.

Now, why can’t Drug Manufacturers automatically make a drug with weight LOSS as a side effect??  Why is weight GAIN always the big one listed (haha). Seriously…what are they putting in there…hot dogs?? Milkshakes?  Okay, I’d take it in milkshake form (I LOVE milkshakes!), but I just don’t understand this. It must be a filler of some kind. Then there’s drooling. What the hell kind of side effect is that??? DROOLING??? Who thinks these things up?
~~~~~~~~~~~~~~~~
“Hey Ron”
“Yeah Charlie?”
“Do ya think we should make people drool with this one?”
“Oh yeah…we haven’t added that one in a long time. I bet people miss that side effect…yeah, let’s add it”.
~~~~~~~~~~~~~~~~~
*snork*   Right!  Okay, so now, I’m fat and drooling. How else can we make this attractive? Oh, I know…let’s make me constipated too! And then we’ll make me super tired, but add in insomnia, so I can’t sleep!! Mwaaaahaaahaaahaaahaaaaa

WitchesBrew1

 

Yeah…that’s about what it feels like. Seriously, I don’t understand why half these side effects are considered acceptable, but we go ahead and take them, because the side effects are worth the overall benefit of the drug itself. And what benefit am I getting from the Abilify? Well for one thing. I have energy again. And an interest in life. I’m not spending 90% of my day sleeping. I’m doing the household chores again. I’m getting together with friends again – socializing. I’m still in chronic pain, but my brain is in such a better place that I’m managing my pain better. Could I go back to work in this condition? No,  not a chance. My pain and fatigue still wipe me out, and I can only manage small chunks of all of these things, broken up throughout the day, but the fact is, I am able to do them again.

I don’t know how long it went on for, but most of my days on Seroquel were spent either in bed sleeping or in my recliner, playing on the computer. I would aimlessly shift between Facebook and a select few other websites I frequent, like Pinterest, some contest sites and game sites where I enjoy solitaire or various slot machines (not for real money). I still do that now, but it’s in between all the other things I’ve found interest in again. I also tend to do a lot of online shopping. Too much, and this can be part of my mania cycle of BD as well. My husband never says anything as long as I record my transactions in our financial system. But I’m doing other things like crafting again, and I’m making cards again for birthdays and stuff, and I want to learn to crochet again (I was just starting to learn and then boom!, totally lost interest when I started having trouble with the Seroquel and didn’t KNOW I was having trouble with it).

Now, here is the list of SEVERE side effects of Abilify. Again, I am bolding the ones I’ve experienced so far:

Call your doctor at once if you have:

  • severe agitation, distress, or restless feeling;
  • twitching or uncontrollable movements of your eyes, lips, tongue, face, arms, or legs (very rare and only for a moment);
  • mask-like appearance of the face, trouble swallowing, problems with speech;
  • seizure (convulsions);
  • thoughts about suicide or hurting yourself;
  • severe nervous system reaction–very stiff (rigid) muscles, high fever, sweating, confusion, fast or uneven heartbeats, tremors, feeling like you might pass out;
  • low blood cell counts–sudden weakness or ill feeling, fever, chills, sore throat, swollen gums, painful mouth sores (I get inflamed tastebuds), red or swollen gums, skin sores, cold or flu symptoms, cough, trouble breathing; or
  • high blood sugar–increased thirst, increased urination, hunger, dry mouth, fruity breath odor, drowsiness, dry skin, weight loss    **oh LOOK! There’s my weight loss, but look what I have to go through to get it!! 🙁

Because I have Type 2 Diabetes, I have to be extra careful in taking this medication. I need to check my blood on a more frequent basis, to make sure I’m maintaining optimum blood sugar levels at all times. I currently inject 14 units of insulin at night only and have done so for about 3 years now. If I notice that my sugars are going quite high on this med, we may have to change that up, and that will be hard for me. I like the benefits of this drug, and I’m not sure I want to start experimenting with other medications.

So…what about you dear reader. Do you have a mental illness? Do you talk about it if you do? Why or why not? Do you know other people who experience prejudice because of a mental illness? How are they treated differently? Do you stand up for them? Advocate for them?

It’s a scary world out there for people with mental illnesses. We never know for sure who our allies are or where we can feel safe talking about our lives and what we experience until we start talking to others. I make myself a safe haven. I talk about my mental illness so others know they can be safe and vulnerable around me. If you need someone to talk to, contact me.  Anything said to me stays private, even from my husband. If you’re on Facebook, look me up. Same with Messenger. Just put the words There Is Always Hope in the subject line, so I’ll know it’s not spam.

If you have anything you’d like to share here, please feel free to add a comment. Thanks for reading and remember…

there is always hope

Furiously Happy – A Tribute

I’m doing a tribute today to an amazing woman named Jenny Lawson. You may have heard of her. She’s an incredible writer and the author of the books “Let’s Pretend This Never Happened”, “Furiously Happy” & “You Are Here”.

She writes about her own struggles with depression and man, can she write!!! Her sense of humour is incredibly warped and twisted (just the way I like it), she blogs as The Bloggess (thebloggess.com) and there are several Facebook fan groups as well, one of which I belong to. We are her Tribe. We get her. We understand what she goes through and experiences, and even if some of us don’t live with depression, most of us know someone who does. For me, it’s my husband.

I wrote this piece one day when I was feeling overwhelmingly happy that I had found this particular Tribe to call my own. Here goes:
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I live with several health issues that leave me in constant chronic pain: Fibromyalgia, Osteoarthritis in all my major joints, Myofascial Pain, Chronic Fatigue Syndrome, Forestier’s Disease, Trigeminal Neuralgia, Diabetes Type 2 (on insulin) and Bipolar Disorder. I had Total Hip Replacement on Feb. 7/17 (with my left hip needing to be done as well and possible knee surgery on my right knee later on) and am having a good recovery. I am still in pain, and always will be.

I used to think that my “furiously happy” would come when I no longer lived in pain. Its only been in the last year or so that I’ve come to realize that will never happen. I will NEVER be without pain…that’s just the nature of my body. And when I realized that there would always be the pain, I thought at first “then I will never truly be happy”. I have an amazing husband, whom I love beyond measure. I have 2 grown up kids that I still worry about and three grandsons that I never get to see because of distance. We keep in touch though with social media, and that’s a good thing, but it’s far from being furiously happy.

Because of my health, I had to give up a career that I adored…Admin Support at the Executive level as well as being a Certified Event Planner. I loved my job with every fibre of my being, but came to a point where I physically couldn’t manage it any longer, and with my chronic fatigue, would never be able to manage again. Everything in my life seemed to be about loss…losing a job, losing my hobbies, losing professional relationships, losing friendships, losing mobility, losing at life.

Hubby and I decided in 2013 to make a move to Vancouver Island from Calgary after the weather in Calgary became too much for my body to handle…too cold, too much snow, too long of winters, too icy…too, too, too. We moved here without a job for Ray or even knowing what our apartment looked like – we rented it sight unseen. Slowly, we started making Victoria our home – walking by the ocean, going for coffee or dinner at various places. I soon realized how much I loved it here, even though there were really no friends to share it with (two couples and one girlfriend and that was all that I knew – and even then we rarely saw each other).

One day, I found the Jenny Lawson book Furiously Happy. I have never laughed so hard in my life. I gave the book to Hubby to read and HE has never laughed so much…and he’s not one to show much emotion ever, good or bad. But he laughed and often. From there, I found her website and her other book and then all of sudden, there was THIS group. People like me. People who were struggling and depressed and suffering mentally and physically and I thought to myself “God, thank you for bringing me home”.

Because I realized quickly that I seemed to be good at encouraging other people in their struggles, so I didn’t have to think about mine. I could offer advice or words of comfort, or just the right kitten picture and something would change for the good in that other life. And MY life felt better because of it.
And then I knew, the way that I became Furiously Happy was by being myself and sharing my life with those of you here who needed what I had to offer…a shoulder to cry on, a hug, some understanding, appreciation…whatever you want to call it. I became Furiously Happy because OF Furiously Happy. And now I have my Hubby and my family and my friends and my volunteering AND MY TRIBE!!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Now, the reason I’m giving a shout out to Jenny today is that she has been undergoing a new treatment for her depression called Transcranial magnetic stimulation (TMS).  It’s described like this: (TMS) is a noninvasive procedure that uses magnetic fields to stimulate nerve cells in the brain to improve symptoms of depression. TMS is typically used when other depression treatments haven’t been effective.
Jenny started treatment 2 weeks ago…and people…IT’S WORKING!!!!!

I want you to go to her blog and read all about it. If you know anyone who is experiencing major depression in their lives and no other treatment has worked, then this MIGHT be an answer for them too. I admire this woman so much, and I’m so delighted that this is working for her, I simply had to share. Please go check it out, buy her books (you will laugh, trust me) and find your tribe if you haven’t already.

If you live with Chronic Pain, Chronic Fatigue, Fibromyalgia, or Invisible Illness of any kind, you can’t go through it alone. You need to find a support group. If you look me up on Facebook, I can introduce you to the Fibro group I belong to. We support everyone who is in pain. And if you’re a fan of Jenny Lawson and want to join the group on Facebook I belong to, use the contact page on the blog here, and let me know.

And remember…

there is always hope